Goodbye & Thank You Respiratory

Hello Readers,

So since my positive hospital appointment in Cardiology last week, I attended the Royal Brompton Hospital again this week. This time I went to see my consultant in Respiratory. The last time I attended an appointment in Respiratory was in 2012. I repeated the same tests for the lungs, such as Spirometry, which is a lung function test. The results of these had no change and my chest was clear! The Consultant was very pleased to see that I had no sign of deterioration in my lung (Yes I have 1 lung… I had a lower right lobectomy at 6 months old). And he is also confident that my asthma is of no worries now! So much so he has signed me OFF!!!!!!!

I am no longer under the Respiratory team of the RBH and will only be monitored for my Pulmonary Hypertension with the Cardiology team. However I am in good trust to know that if changes ever occurred within my lung, I would be referred straight back to Respiratory by my Cardiologist!

In other news..

I finally met a lovely, strong lady, Shani. We met through the Pulmonary Hypertension group and we both have the same kind of Pulmonary Hypertension. We are of the same age (born a week apart, haha) so it was wonderful meeting up with her over a spot of lunch. We definitely chatted the hours away and I can truly say she is a very inspirational young lady with lots of hope and optimism for life! Another true PHighter!

Me and Shani
More news...

I have since gone to another Cardiology appointment, this time at Colchester General Hospital (my local one) and saw my Cardiologist. He was very pleased to hear that I have been doing well and he was very interested in my studies for Music Therapy. He did all the usual tests - chest clear, no infection, but very low blood pressure (even I was surprised!) so I've got to take it easy and drink lots of fluids in this weather!! Overall a very good appointment and not needed until April.

That's it!! All hospital appointments for 2015 over.... I hope!!!!!

A Positive Hospital Appointment


Hello Readers,

I went to the Royal Brompton Hospital in London. It was such a long and tiring day, but something that has to be done. My last appointment was in December, so it's been a while since I last saw my consultant.

I woke up bright and early to get the 7am train to South Kensington. Once there I went straight to ECHO. An Echocardiogram is a test that uses ultrasound to produce moving, real-time images of your heart. The procedure helps to check the structure of your heart and how well it’s functioning. 

I had my appointment with the consultant and I told her despite everything that had happened since my last appointment, ie; my Dad’s death, my MA exams, holidays, etc, I had been quite well. I mentioned my episode of being in hospital in June - this was put down to stress and over doing it. Otherwise I hadn’t had any infections or been on antibiotics!

She told me my ECHO had come back fine – no change or deterioration with my heart and my heart muscle is beating as strong as ever! So all good news there! My ECG also came back normal (normal for me) as well. The medication is obviously doing its job since my diagnosis 7 years ago, and they are happy for me to stay on this, so no changes there either! Happy days!

I then met up with my Nurse Specialist, had a catch up with her about my health and then did the usual 6 Minute Walk Test. I did very well on this, and have beaten my Personal Best, which I made back in December – so yet again more good news!

I had the usual gory blood tests – yet to find out results from them, but I am sure if anything was wrong, they would get hold of me straight away!

Of course, I put my very best into the tests that I have to do, because that’s just me! So yes, I was pretty shattered! However hearing the words you’re stableis the best news to hear, as of course each time I have to attend an appointment I am always nervous as to what is going to happen. Will it be good or bad news? Am I getting worse? Will I need to change medication? Questions like these are spinning around in my head as I travel there!

Finally, despite all this good news, I must remember that I am able to live this life as I must follow my limits and not over do things, as most of my close friends and family are telling me 24/7!!! Haha! There may be no cure for Pulmonary Hypertension, but one thing is for sure, I will keep living life to the full until a cure is found!

So there it is, a positive hospital appointment!

Thank you to those who continue to love and support me throughout this journey!

Much love, x


Hope and Holidays

Hello Readers,

So it’s been a while since my last blog entry...

Firstly, us PH'ers were given a new glimmer of hope thanks to Cambridge research. "Research by Cambridge scientists which offers hope of first treatment targeting the cause of a debilitating heart and lung disease has been welcomed by a woman who has been suffering with the condition for seven years. A study funded by the the British Heart Foundation (BHF) and carried out at Cambridge University has found a protein that targets the effects of a faulty gene could offer the first treatment targeting the major genetic cause of Pulmonary Arterial Hypertension (PAH)" 

For people like myself, this is great news as the only cure for those with PH is a heart and double lung transplant, which can have serious risks and complications. Whether this could help my kind of PH is another thing, but research like this, always brings new hope!

I found out this news thanks to a phone call from the British Heart Foundation, which was followed by another phone call from a reporter for the Cambridge News. I spoke about my diagnosis and living with Pulmonary Hypertension and my opinion of this hopeful news! You can read my interview in the Cambridge News, by clicking on the following link... Cambridge News

Unfortunately I had a crippling migraine between holidays. I hate these as they knock me out for a couple of days. Mine are due to the lack of oxygen getting into the nerves of my brain, which I just have to live with.

Apart from that, I have been fortunate enough with my heart being stable, meaning I have been well and 'fit for flight' to go on two fabulous holidays!!!!!!

First holiday to Greece with my Mother, which we thoroughly enjoyed and it also incorporated my Brother’s Wedding! This was a lovely, lovely day and it was so wonderful being part of their special day!!

Mum, JP (bro), Angie, Me
Me and Mum

Second holiday, I flew to Majorca with Terry. We hired a car, which meant we visited attractions in our own time, such as Caves of Drach, Mini-Golf, beaches, as well as just chilling out and sunbathing by the pool. Overall a fantastic holiday together!

Last Night in Majorca
Beach Time





Now back to reality and start reading a big pile of books so I can look into writing my Master’s Dissertation. I also have my routine appointment with the Royal Brompton Hospital next week, you’ll be sure to know I will let you know how it goes!